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April 2019

 ACC Patient Meetings

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ACC Patient Meetings
2018 Patient Meeting Boston, USA

Patient gatherings are not for everyone. Some people prefer to deal with their diagnosis within a small circle of loved ones. However, many initially-cautious patients are surprised by how comforting and cathartic it can be to share experiences with others facing the same rare disease. Fortunately, there are a growing number of patient gatherings across the globe. Please consider attending one of the following events that typically include a few hours of socializing and research updates while sharing a meal or two.
ACCRF Patient Meetings:

St Paul, Minnesota, USA - May 4, 2019 

Washington, DC, USA  - June 23, 2019

Boston, MA, USA  - October 19, 2019 

Patients who would like to organize a gathering in their own region may contact Shalil Giannone at

UK & European Patient Meetings:

London, UK - Saturday May 18, 2019 

Brussels, Belgium  - September 14, 2019

Upcoming Races

May 5, 2019 
St. Paul, MN, USA

Gabe Grunewald  has been living with ACC for nearly ten years.  During this time ACCRF's work  - to accelerate the development of improved therapies and a cure for the disease - has given Gabe the hope and courage to train and race through her struggles with this disease.    G abe continues to return the favor and offer her thanks by hosting this 2nd annual 5K with proceeds going to ACCRF.

To register, click here:   Brave Like Gabe 5K to Support ACCRF

For those who want to join the cause and participate from afar, you can be part of the action through the Virtual 5K. Once you sign up your race kit will be mailed to you in May and you will receive instructions for how to run from anywhere in the world. Walkers are always welcome, too!

To register, click here:   Brave Like Gabe Virtual 5K to Support ACCRF

 Please Help Support ACC Research